Sorry we were MIA over the weekend, we were getting a lot of rest, so sort of forgot about posting. But I know lots of people want to know the latest, so I figured I'd post something before I get all the phone calls.
She was successfully extubated on Friday afternoon. They took a look at her airway an
d discovered that she does not have Tracheomalacia, but she has "Laryngomalacia", which looks like this (the one on the right):
It sort of explains what happened the night that she was having issues breathing. They think that because of her vomiting, it inflamed her epiglottis, which was already floppy, and that collapsed her airway even more, which made her work very hard to breathe.
They kept some oxygen with high flow going thru her nose, but she is breathing (still very noisily) fine.
Not too much happened over the weekend, except that she had a very hard time going to sleep. The first night after extubating her, they did not want to give her any sedatives for fear of her not being able to breathe on her own. She had a lot of shakes, sweats and basically did not sleep at all the first night. They finally gave her some Adavan and Benadryl to help calm her down the following morning, which helped temporarily but she continued the be agitated for most of the day. They did the same the following night, but had the same issues, Zev and I took turn trying to get her to sleep, so we were awake most of the night as well. I believe it was Saturday night that they started giving her some Methadone.
Part of the reason why she was having the tremors and sweats more than usual was because she was on some pretty heavy narcotics for the week that she was intubated (Fentanyl, Precedex, and Versed with occasional doses of Propofal and Morphine). So they sort of made her a little mini addict, and then took it away once she was extubated, so she was dealing with withdrawal symptoms. The Methadone helps them wean her off of the drugs a little easier than just stopping cold turkey.
Today she went down to Radiology for a gastric emptying study, tomorrow she'll get an Upper GI study, and once she is feeding again they'll do the PH probe. For now she has not had any food in her stomach (not even with the feeding tube) since they extubated her on Friday. So, she is getting TPN plus fats in her central line IV (going into her jugular vein) which is giving her all the nutrients she needs and calories, but I don't think it really takes away the feeling of having a full tummy, so I'm sure part of her frustration is also feeling hunger. They are trying to do all the GI studies to see how bad her acid reflux is, so they can figure out when to start feeding her again. She also has sort of forgotten how to suck and swallow because she was intubated for a week, so they had an occupational therapist coming to see her to help her get more coordinated.
According to the OT, she is still coordinated but her gag reflex is not really there, so they don't want to feed her and then have her aspirate anything into her lungs. I'm hoping that after her upper GI study tomorrow they can start feeds again. For that study they have her swallow a dye, and then take X Rays to see where stuff goes, and if it refluxes a lot and how long it takes to go through her system.
Neurology is having a Neruo-Muscular Specialist come in today to asses her, since they want to see if there is any way it could be a neuro-muscular problem. They want to make sure he gets any additional tests he thinks she may need before starting the IVIG treatment, which they still think is a good thing to do. They also did a test to see if there is any muscular degeneration and it came back negative, which is good news. So far, everything had been negative from all the tests they've done but they are also still waiting for a lot of tests to come back, especially the Genetics tests.
So again it's back to waiting for all this stuff to happen. We'll update as we get more info.